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About KayTee

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    Senior Bronze Member

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    Northern California
  1. Thank you!! And thank you very much Amanda. This Quote sustains me.
  2. Hi Kitty: Thanks for ranting - really. It does help and there are so few people who can understand what the constant, chronic issues of this disease are. And this is a wonderful place for all the information and support. I don't know where I got this quote - it may even have been this site - but I keep this on my desk top and open it on those days (frequent) I need it: "We forget that we have lost our lives, we may still be alive but we have lost the lives that we were living prior to scleroderma, that's going to have an impact on us somewhere along the line. Let me stress that it
  3. Hi everyone: Just an update: Although I'm going with the lung function tests etc. two of my doctors think it could have been a heart attack when I described it. So more tests. I thought I was pretty educated about things but I did not realize pain was not always a symptom. Perhaps we all try to diagnose ourselves a little too much since we think we know our disease pretty well? Feeling a little stupid here. Hugs.
  4. Dear miocean: What a bad day for you. Lots of hugs and special care are being sent your way. As far as machine malfunctions, my first day of radiation for breast cancer the machine malfunctioned and I apparently got a larger dose that I should have. We trust in our doctors and machines and 98% of the time our trust is well-rewarded. Where would we be without them? But I'm glad you can participate in a study. That may bring some new relief and meds? I have started a new binder for all my tests and meds and labs and etc.etc.etc. I may need some of those stickers doctors use for all their fol
  5. Thank you everyone. I've never heard of hyperventilation so I'll check into it. So far the interstitial stuff has been ruled out and numerous tests have looked at my heart and lungs. But what was last year isn't this year right?
  6. Hi everyone, It's been a while since I've posted (sorry - grandkiddies keeping me busy). For the past year I've experienced some shortness of breath episodes that are getting more severe and I'd like to know if these sound like anything other people have experienced. My back will start to ache, often there is a nauseous dizzy feeling, and then a distinct feeling that I cannot get enough air. The last episode (sounds so Victorian!) hit suddenly and I suddenly found myself crouching on the floor gasping for breath totally unable to get up for about 15 minutes. My LFT shows 67% DC
  7. Wow. Thanks everyone for all your insights. After years of being a successful To Do list person I am now abdicating that list and starting the Ta Da. Hugs all.
  8. Hi Sunny: I have general morphea and limited scleroderma CREST. Looking back the first issue was with Raynaud's and the CREST was diagnosed first (after a couple of years of course - when I was about 56). But I had also noticed discolored patches on my thighs that seemed to do very little except a feeling of burning in the sun or chills at other times. About 2 years ago the skin discolorations and redness moved to my abdomen/trunk. I was lucky enough to find a dermatologist in San Francisco who had extensive links to the scleroderma community and knew exactly what it was and then confirmed it
  9. French knickers and tap pants - all good. I've had some relief with underwear made of Tencel. Good luck.
  10. Thank you Google also. And Genentech and all the other donors. We love you.
  11. Hi Shawn: My experience was that there was some relief with a CREST diagnosis and a sense of now what is ahead of me. But I have found good doctors (not always the first time) and feel like I'm on a positive plan to manage my symptoms. I agree with the low-hanging fruit theory and sometimes had doctors who were very quick to usher me out of the door. Good luck.
  12. miocean: Good for you with the yoga pose. Sometimes doctors think not getting worse is progress but isn't it wonderful when you can see some progress even it is little baby steps. I used to live in NJ so I'm basically a flatlander at heart and I choose my hills carefully! Hugs to all.
  13. Thanks as always for this topic. I thought it was just perhaps stiffness but I have felt very wobbly the past couple of years and am definitely in the eyes to the ground category. Thank goodness I have a one level house - but it's on a hill. well, more precisely lots of hills. But I do some walking, eyes down, and hope no one thinks I'm not looking at them and saying good morning because I'm grouchy.
  14. Good luck Marsha. Hope your news is helpful and ultimately so are the drugs.
  15. Hi Amberjolie: I hope you are feeling better. There are those days to exercise and those days/weeks? when it is more difficult. I try to learn from and love my body even when it sometimes doesn't love me :) Warm hugs.
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